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When I introduced the earliest version of the
"Genetic Information Nondiscrimination Act" eight
years ago, mapping of the human genome was four
years from completion. Today, the human genome is a
reality, and the potential for genetic information
to be used against individuals is equally real.
"The Genetic Information Nondiscrimination Act of
2003", which unanimously passed the Senate in
October 2003, is designed to protect individuals
against the potential discrimination based on their
genetic information, and in doing so, it will serve
as a way to encourage Americans to take advantage of
the possibilities genetic testing can offer. This
legislation will grant the protection to those who
seek the benefits of genetic testing, by giving them
the peace of mind in knowing that they will not be
afflicted with breast cancer or Huntington’s disease
or cystic fibrosis or other conditions. Genetic
testing is a powerful early predictor for these
conditions, and as well as for some forms of breast
cancer, which strikes almost 192,000 women each
year.
And it is a breast cancer story that helped
inspire me to push for this legislation. In 1997, I
received a letter from Bonnie Lee Tucker, a resident
of Maine. She wrote to me about her fear of having
her daughter take the BRCA test - the genetic test
that predicts the probability of breast cancer -
even though she has 9 women in her immediate family
who were diagnosed with breast cancer. Bonnie Lee,
herself, is a survivor of breast cancer. Bonnie
Lee’s letter conveyed a mother’s fear for her
daughter’s future. She had knowledge at her
fingertips, but feared accessing it, over concern
that the medical report could become the basis for
discriminating against her for insurance coverage or
future employment.
Seven years after that letter and almost a year
after the Senate passed this critical life-saving
legislation, the House of Representatives has failed
to take up this legislation. Indeed this is
disappointing news given that the Senate after 16
months of extensive bipartisan legislation found a
way to move this legislation forward.
The philosophy behind the current bill has not
been lost since its inception in 1996, when
Representative Louise Slaughter and I introduced our
first bills on the subject of genetic
discrimination. As genetic science continues to
expand the possibilities for combating and
preventing diseases, the potential for significant
negative repercussions are a dangerous reality..
Those in the House of Representatives need to
understand that "The Genetic Information
Nondiscrimination Act" fills critical gaps of
existing protection laws. For the first time, this
legislation will allow the Department of Labor and
Health and Human Services to enforce directly
against plans and issuers; ensure that all Americans
no matter where they live are protect from
discrimination; ensure all types of employment
discrimination cases are treated equally; and,
completely ban collection of genetic information
prior to enrollment.
What is clear is that genetic testing is at the
forefront of preventative medicine and will likely
further our knowledge of the detrimental diseases
that afflict millions. There is virtually no one who
can say their lives have not been touched in some
way by colon cancer or Huntington’s disease or
breast cancer. Bonnie Lee Tucker is my daily
reminder of the survivors, and those who didn’t
survive. Genetic testing holds great opportunities
to predict and prevent diseases, and accelerate the
options in treatment. It is our responsibility to
use that information prudently and compassionately.
We simply cannot use predictive information
gleaned from genetic tests as a means of
discrimination. Genetic information has the
potential to save lives. But, it is only as
effective as long as we as a society allow it to be
used as a predictor, not a reason to exclude. "The
Genetic Information Nondiscrimination Act of 2003"
ensures that those negative consequences never
occur, by protecting people from being discriminated
against on the basis of their genetic information
when applying for health insurance or employment.
Again, I urge my colleagues in the House to
recognize the importance of this legislation and
take it up quickly to protect our citizens from
discrimination based on their genetic information,
while encouraging them to take advantage of the
life-saving possibilities that genetic testing can
offer.
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